Fibromyalgia – A Guide

Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body.

Introduction
Symptoms of fibromyalgia
Causes of fibromyalgia
Diagnosing fibromyalgia
Treating fibromyalgia
Self help for fibromyalgia

Introduction

The name fibromyalgia comes from three Latin words:

• ‘fibro’ meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
• ‘my’ meaning muscles
• ‘algia’ meaning pain

However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:

• difficulty sleeping
• headaches
• irritable bowel syndrome (IBS)
• muscle stiffness

See symptoms for more information.

How common is fibromyalgia?

It is estimated that fibromyalgia affects nearly 1 in 20 people across the globe. In England and Wales, there could be up to 1.76 million adults with fibromyalgia.

Anyone can develop fibromyalgia, although the condition affects more women than men. In most cases, fibromyalgia occurs between 30 and 60 years of age, but it can develop in people of any age, including children and the elderly.

Fibromyalgia can be a difficult condition to diagnose because there is no specific test and the symptoms can be similar to those of other conditions.

Outlook

There is currently no cure for fibromyalgia, because the cause is unknown. However, there are a number of treatments that may ease symptoms. Treatment tends to be a combination of:

• medicines – such as antidepressants and painkillers
• talking therapies – such as counselling
• lifestyle changes – such as better sleeping habits and relaxation

In particular, exercise has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain. See treatment for more information.

For most people, the symptoms of fibromyalgia are permanent, although they can vary in severity. There are several lifestyle changes that can help to relieve your symptoms and make your condition easier to live with. See self help for more information and advice.

Symptoms of fibromyalgia

There are many symptoms of fibromyalgia and they tend to vary from person to person. The symptoms can also come and go over time, although it is unlikely they will ever disappear altogether.

Your symptoms may sometimes get better or worse, depending on factors such as:

• changes in the weather
• your stress levels
• how physically active you are

The main symptoms of fibromyalgia are outlined below.

Pain

If you have fibromyalgia, one of your main symptoms is likely to be widespread pain. This may be felt throughout your body, but could be worse in particular areas, such as your back or neck. The pain is likely to be continuous, although it may be better or more severe at different times.

The pain could feel like:

• an ache
• a burning sensation
• a sharp stabbing pain

Extreme sensitivity

Fibromyalgia can cause you to become extremely sensitive to pain all over your body, and you may find that even the slightest touch is very painful. If you hurt yourself, for example if you stub your toe, you may find that the pain continues for much longer than it normally would.

You may hear this described in the following medical terms:

• hyperalgesia – when you are extremely sensitive to pain
• allodynia – when you feel pain from something that should not be painful at all, such as a very light touch

If you have fibromyalgia, you may find you are very sensitive to other things as well, such as smoke, certain foods and bright lights. Being exposed to something you are sensitive to can cause your other fibromyalgia symptoms to flare up.

 

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Stiffness

Fibromyalgia can make you feel stiff. The stiffness may be most severe when you have been in the same position for a long period of time, such as when you first wake up in the morning.

Fibromyalgia can also cause your muscles to spasm, which is when they contract (squeeze) tightly and painfully. This can affect your sleep (see below).

Fatigue

Fatigue (extreme tiredness) as a result of fibromyalgia can range from a mild, tired feeling to the exhaustion often experienced during a flu-like illness. Sometimes, severe fatigue may come on very suddenly and can drain you of all your energy. If this occurs, you may feel too tired to do anything at all.

Poor quality sleep

Fibromyalgia can affect your sleep. You may find you often wake up tired even when you have had plenty of sleep. This is because fibromyalgia can sometimes prevent you from sleeping deeply enough to refresh you properly. You may hear this described as ‘non-restorative sleep’.

Cognitive problems (‘fibro-fog’)

Cognitive problems are problems with mental processes, such as thinking and learning. If you have fibromyalgia, you may have:

• trouble remembering and learning new things
• problems with attention and concentration
• slowed or confused speech

Headaches

If you have pain and stiffness in your neck and shoulders from fibromyalgia, you may also have frequent headaches. These can vary from being mild headaches to severe migraines, which may also involve other symptoms, such as nausea (feeling sick).

Irritable bowel syndrome (IBS)

If you have fibromyalgia, you may develop irritable bowel syndrome (IBS) as well. IBS is a common digestive condition that causes pain and bloating in your stomach. It can also cause constipation (when you are unable to empty your bowels) and diarrhoea (passing loose stools).

Other symptoms

Other symptoms of fibromyalgia can include:

• not being able to regulate your body temperature (feeling too hot or too cold)
• restless legs syndrome (unpleasant sensations in your legs and feeling like you need to move your legs to get some relief)
• tingling, numbness, prickling, or burning sensations in your hands and feet (paresthesia)
• tinnitus (the perception of a noise in one or both ears that comes from inside your body)
• unusually painful periods (in women)
• anxiety
• depression (see below)

Depression

It is possible for fibromyalgia to lead to depression. This is because the condition can be difficult to deal with, and low levels of certain hormones, such as serotonin, can make you prone to developing depression.

Depression can cause many symptoms, including:

• constantly feeling low
• a lack of interest in the things that you usually enjoy
• feeling tearful

If you think that you may be depressed, it is important to get help from your GP, or your fibromyalgia healthcare professional.

Causes of fibromyalgia

The exact cause of fibromyalgia is unknown. Research into people with fibromyalgia has identified a number of changes in the way that their body functions. However, what causes these changes in the first place, and how exactly these cause fibromyalgia, is still not clear.

Te changes that have been noticed in people with fibromyalgia include:

• disturbed pain messages
• low levels of hormones
• sleep problems

These are explained in more detail below.

Disturbed pain messages

One of the most likely causes of fibromyalgia is a problem with the way that pain messages are carried and received in your body.

The central nervous system (brain, spinal cord and nerves) transmits information all over your body through a network of specialised cells. In people with fibromyalgia, the way that pain messages are processed is disturbed. This may explain why fibromyalgia results in constant feelings of pain and extreme sensitivity to pain.

Low levels of hormones

People with fibromyalgia have been found to have lower-than-normal levels of the hormones serotonin, noradrenaline (also known as norepinephrine) and dopamine.

Low levels of these hormones may be a key factor in the cause of fibromyalgia, as they each control many of the processes in the body. For example:

• serotonin – this helps to regulate your moods, your appetite, and the way that you sleep
• noradrenaline – this contributes to your response in stressful situations
• dopamine – this helps to control your mood and behaviour, and the way that you learn

Sleep problems

It is possible that disturbed sleep patterns may be a cause of fibromyalgia, rather than just a symptom. Fibromyalgia can prevent you from sleeping deeply and cause fatigue (extreme tiredness). People with fibromyalgia who sleep badly also seem to feel more pain. This may suggest that the sleep problems in some way contribute to the other symptoms of fibromyalgia.

Risk factors

There may be some risk factors that can either make fibromyalgia more likely, or act as a trigger for the condition. These include:

• physical trauma (damage to the body’s tissues)
• psychological trauma (an incident that causes emotional damage, such as the death of a loved one)
• a viral infection (such as hepatitis B, hepatitis C or HIV and AIDS)
• being depressed

Genetics

There may be a genetic link to fibromyalgia, with some people being more likely than others to develop the condition due to their genes (the units of genetic material inherited from their parents). If this is the case, a genetic predisposition (tendency) could explain why some people develop fibromyalgia after some sort of trigger.

Other conditions

There are several other conditions that can lead to fibromyalgia. In these cases, the condition is known as secondary fibromyalgia. Conditions that can cause fibromyalgia include:

• metabolic disturbances such as an underactive thyroid – when the thyroid gland does not produce enough of the thyroid hormone
• inflammatory disorders such as rheumatoid arthritis – a condition that causes joint pain and stiffness

It is also possible that there is no single cause of fibromyalgia, and that several of the above factors may combine to cause the condition.

Diagnosing fibromyalgia

If you think you may have fibromyalgia, visit your GP. Diagnosing fibromyalgia can be difficult, as there is no specific test that can diagnose the condition. The symptoms of fibromyalgia can be varied and very similar to those of several other conditions.

Your GP will diagnose fibromyalgia based on you having a typical mix of symptoms and ruling out any other conditions that could be causing these.

Visiting your GP

Your GP may ask you about:

• your pain
• your symptoms
• if you have any other conditions
• how the symptoms affect your daily life
• if you are taking any medicine

You may also have a physical examination, where you GP will check your entire body for any visible signs of fibromyalgia, such as swollen joints.

Ruling out other conditions

If your GP thinks you may have fibromyalgia, they will first have to rule out any other conditions that could be causing your symptoms. These conditions include:

• chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME) – a condition that causes long-term tiredness
• rheumatoid arthritis – a condition that causes pain and inflammation (swelling) in the joints
• multiple sclerosis (MS) – a condition of the central nervous system (the brain and spinal cord) that affects movement and balance

You may have blood tests, X-rays and other scans to rule out these and any other condition with symptoms similar to fibromyalgia. If you are found to have another condition, you could still have fibromyalgia as well.

Once all other conditions have been considered or ruled out, there are two criteria that can be used to confirm a diagnosis of fibromyalgia. If your symptoms fit within these criteria, it is likely you will be diagnosed with fibromyalgia.

The criteria for diagnosing fibromyalgia are:

• widespread pain for more than three months on both the left and right sides of your body, above and below your waist
• pain in at least 11 of the 18 ‘tender points’ when they are pressed

Tender points

The tender points are the areas on your body where your pain is likely to be at its worst. They are places on the body where everyone is most sensitive to pain, so if you have fibromyalgia, these areas will be very painful.

There are tender points at the back of your neck, above each of your shoulder blades and the inside of your elbows. Your GP may also press other areas that are not tender points, to compare how much more painful the tender points are.

Additional conditions

It is also possible to have other conditions alongside your fibromyalgia. For example:

• depression (long-term feelings of extreme sadness)
• anxiety (constant feelings of worry)
• irritable bowel syndrome (a condition that affects the digestive system)

If your symptoms suggest you have another condition as well, you may need further tests to diagnose these. Identifying all possible conditions will help to guide your treatment.

Treating fibromyalgia

There is no cure for fibromyalgia, but treatment aims to ease your symptoms as much as possible and to improve your quality of life.

Your treatment will be decided jointly between you and your GP, depending on what you prefer and what is available. Several different healthcare professionals may also be involved in your treatment, such as:

• a rheumatologist (a specialist in conditions that affect the muscles and joints)
• a neurologist (a specialist in conditions of the central nervous system)

As fibromyalgia has a number of different symptoms, no single treatment will work for all of them. It is therefore likely you will need to try a variety of treatments to find a mix that suits you. This will normally be a combination of medication and lifestyle changes.

Information and support

You may find it helpful to research fibromyalgia to improve your understanding of the condition. Many people also find support groups helpful. Just talking to someone who knows what you are going though can make you feel better. See the box to the right for more information, or the Useful links.

Medicines for fibromyalgia

You may need to take several different types of medicines for fibromyalgia, including painkillers and antidepressants. A number of different medicines are described in more detail below.

Painkillers

If you have fibromyalgia, you can treat your pain using simple painkillers, such as paracetamol. These are available over the counter from a pharmacy. Always read the manufacturer’s instructions.

If paracetamol is not effective in easing your pain, your GP (or another healthcare professional treating you) may prescribe a stronger painkiller, such as codeine or tramadol. Research has found that tramadol can improve pain and may also help you function better in your daily activities.

Side effects of tramadol include:

• diarrhoea
• fatigue (extreme tiredness)
• withdrawal symptoms if you stop taking it

Antidepressants

Antidepressant medicines for fibromyalgia are not prescribed specifically to treat depression. They are used to boost the levels of certain neurotransmitters, such as serotonin, noradrenaline and dopamine. Neurotransmitters are chemicals that carry messages to and from the brain.

It is thought that low levels of these neurotransmitters may be a factor in causing fibromyalgia, and that raising their levels may help to treat the condition and ease the pain of your symptoms.

There are many different types of antidepressants. The choice of medicine will depend on the type of fibromyalgia that you have, the severity of your symptoms and any side effects that the medicine may cause.

Antidepressants used to treat fibromyalgia include:

• tricyclic antidepressants – such as amitriptyline, which raise levels of serotonin and noradrenaline
• serotonin-noradrenaline reuptake inhibitors – such as duloxetine, which raise levels of serotonin and noradrenaline
• selective serotonin reuptake inhibitors (SSRIs) – such as fluoxetine and paroxetine, which raise levels of serotonin

There are also two other types of medicine that affect the levels of neurotransmitters and are sometimes used to treat fibromyalgia:

• pramipexole
• tropisetron

Antidepressants can cause a number of side effects, including:

• nausea (feeling sick)
• dry mouth
• dizziness
• disturbed sleep
• constipation (feeling unable to empty your bowels)

For more information on the side effects of your particular medication, see the patient information leaflet that comes with it.

Medicines to help you sleep

As fibromyalgia can affect your sleeping patterns, you may wish to try medicines to help you sleep. If you are sleeping better, you may find that your other symptoms are not as severe.

Speak to your GP if you think that a medicine to help you sleep could benefit you. They may recommend an over-the-counter medicine, or in some cases prescribe a short course of a stronger medication.

Muscle relaxants

If you have muscle stiffness or spasms (when the muscles contract painfully) as a result of fibromyalgia, your GP may prescribe a muscle relaxant to ease your symptoms. These medicines may also help you to sleep more deeply at night because they can have a sedative (sleep-inducing) effect.

Anticonvulsants

You may be prescribed an anticonvulsant (anti-seizure) medicine, as these can be beneficial in treating fibromyalgia.

The most common anticonvulsant used for fibromyalgia is pregabalin, which is normally used to treat epilepsy (a condition that causes seizures). One review of research into pregabalin found that 40% of people who used it for fibromyalgia reported feeling ‘much or very much’ improved.

You may be able to take pregabalin as a brand called Lyrica. Possible side effects include:

• dry mouth
• constipation
• nausea
• vomiting
• dizziness
• blurred vision
• weight gain

Antipsychotics

Antipsychotic medicines, which are also called neuroleptics, are sometimes used to treat conditions that cause chronic (long-term) pain, such as fibromyalgia. The effectiveness of antipsychotics is not clear, with one review finding mixed results when considering their use in a number of conditions.

However, you may be prescribed an antipsychotic as they can help relieve pain in some people. Possible side effects include:

• drowsiness
• tremors (shaking)
• restlessness

Other treatment options

As well as medication, there are some other treatment options that can be used to help cope with the pain of fibromyalgia. These include:

• swimming, sitting or exercising in a heated pool or warm water
• an individually tailored exercise programme (see self-help for more information)
• cognitive behavioural therapy (CBT) – a talking therapy that changes the way you think about things so you can deal with problems more positively
• psychotherapy – a talking therapy that helps you understand and deal with your thoughts and feelings
• relaxation techniques (see self-help for more information)
• physiotherapy – when techniques such as massage are used to improve any physical problems, such as muscle stiffness or weakness
• psychological support – any kind of counselling or support group that helps you deal with the issues caused by fibromyalgia

Alternative therapies

Some alternative therapies, such as acupuncture (where thin needles are inserted into certain points around the body to help relieve pain), claim to relieve or prevent fibromyalgia symptoms. So far, there is a lack of evidence supporting their effectiveness. See the Health A-Z topic about Acupuncture for more information.

Until more research has verified that alternative therapies may have some benefit, they are not recommended for treating fibromyalgia.

Research into some complementary medicines, such as plant extracts, has found that they are not effective for fibromyalgia. If you decide to use any complementary or herbal remedies, check with your GP first. Some remedies can react unpredictably with other medication, or make it less effective.

Treating other conditions

If you have been diagnosed with another condition as well as fibromyalgia, such as depression, you may be recommended separate treatment for this. For example, you may be recommended additional counselling or medication.

Self help for fibromyalgia

If you have fibromyalgia, there are several ways you can change your lifestyle to help relieve your symptoms and make your condition easier to live with.

Your GP, or another healthcare professional who is treating you, can offer you advice and support about making these changes part of your everyday life. There are a number of organisations to support people with fibromyalgia that may also be able to offer advice (see the Useful links for more information).

Exercise

As fatigue (extreme tiredness) is one of the main symptoms of fibromyalgia, you may find you often feel unable to exercise. However, an exercise programme that is specially suited to your condition can help to manage your symptoms, as well as improve your overall health.

Your GP or physiotherapist (healthcare professional trained in using physical techniques to promote healing) can help you design a personal exercise programme, which is likely to involve a mix of:

• aerobic exercises
• strengthening exercises

Aerobic exercise

Aerobic activities are any kind of rhythmic, moderate-intensity exercises that use the large muscles in your legs and buttocks. The exercise should raise your heart rate and make you breathe harder. Examples include:

• walking
• cycling
• swimming

Research suggests that aerobic fitness exercises should be included in your personalised exercise plan, even if you cannot complete these at a high level of intensity. For example, if you find jogging too difficult, you could try brisk walking instead.

A review of a number of studies found that aerobic exercises may improve quality of life and relieve pain. As aerobic exercises increase your endurance (how long you can keep going), these may also help you function better on a day-to-day basis.

Strengthening exercises

Strengthening exercises are those that focus on strength training, such as lifting weights. These exercises need to be planned as part of a personalised exercise programme, as otherwise they can make muscle stiffness and soreness worse.

A review of a number of studies concluded that strengthening exercises may improve:

• muscle strength
• physical disability
• depression
• quality of life

People with fibromyalgia who completed the strengthening exercises also reported that:

• they felt less tired
• they could function better
• their mood was improved

Improving the strength of your major muscle groups can make it easier for you to move onto aerobic exercises.

Relaxation

If you have fibromyalgia, it is important that you regularly take time to relax, or practice relaxation techniques. Stress can make your symptoms worse or cause them to flare up more often. It could also increase your chances of developing depression.

There are many relaxation aids available, including books, tapes and courses, although deep-breathing techniques or meditation may be just as effective. Try to find time each day to do something that relaxes you. Taking time to relax before bed may also help you to sleep better at night.

Talking therapies, such as counselling, can also be helpful in combating stress and learning to deal with it effectively. Your GP may recommend you try this as part of your treatment.

Better sleeping habits

Fibromyalgia can make sleeping difficult. The following advice is aimed at people with insomnia (difficulty getting to sleep or staying asleep), but may also help if your fibromyalgia is affecting your sleep:

• go to bed and get up at the same time every night and morning
• try to relax before bed (see above)
• avoid caffeine, nicotine and alcohol before going to bed
• avoid eating a heavy meal late at night
• make sure your bedroom is a comfortable temperature, and is quiet and dark
• avoid watching the clock throughout the night

Pacing yourself

Pacing involves balancing periods of activity with periods of rest. It means not overdoing it or pushing yourself beyond your limits. If you do, it could slow down your progress in the long term. Over time, you can gradually increase your periods of activity, while making sure that they are balanced with periods of rest.

If you have fibromyalgia, it is likely you will have some days when your symptoms are better than other days. Try to maintain a steady level of activity at all times, without ever overdoing it. It is important that you always listen to your body and that you slow down and rest whenever you need to.

You should avoid doing any exercise or activity that pushes you too hard, because this can make your symptoms worse. If you pace your activities at a level that is right for you, rather than rushing to do as much as possible in a short space of time, you should be able to make steady progress.